Vit D deficiency, fibromyalgia, surgical menopause

I am a 70 year old male and have had a discussion on patient which I should imagine you can follow about the side effects of high dosage vitamin D treatment . I was prescribed 40,000 iu per week for ten weeks. I have got through 6 weeks and was hoping to get through the ten weeks but the symptoms just got worse with time and my muscles got so weak that I could not get up from the cinema seat and then could not stand up from the table in the Indian restaurant afterwards. I am now  using crutches belonging to one of my sons from a previous BMX accident. I will get in touch with the local surgery on Monday but am advised by my wife and friends to stop the high dosage vitamin D treatment for a period to start feeling better and then start taking normal daily dose of say 1000 iu vitamin D. There is a lot on the internet about the side effects of  high level vitamin D treatment. I did try very hard to get through the ten week course  but not being able to stand up from a chair and having aching legs stopping me sleeping was just too much . I hope that you recover but from my experience most doctors will never admit to drugs having side effect and some you simply cannot live with. Rhodri.

The symptoms you describe can be due to other things besides fibromyalgia which, all too often, is the doctor's get out because they can't be bothered. Have you had any other blood tests?

One cause can be low vit D - but not necessarily. My husband had a level of 7 and not a symptom in sight! Replenishing his vit D has not made any difference in that sense - except his previously raised BP has gone down quite a bit. Low vit D can cause hypertension!

Another cause of such symptoms is PMR, polymyalgia rheumatica, which in 80% of patients comes with raised blood markers (ESR and CRP) indicating inflammation. If you have raised markers you haven't got fibromyalgia, you have PMR. It can be managed with a low to moderate dose of corticosteroids which relieve the symptoms until it goes into remission after anything from 2 to 6 years for 75% of patients. Steroids don't relieve fibromyalgia. The stress of an op often is the final trigger for the immune system going haywire and causing PMR.

And menopause can also be the reason for these sort of symptoms and it is often worth getting hormone checks done. If your HRT in the past didn't help then that is less likely - unless you weren't on the right sort or not enough.

I know a couple of people who had such symptoms, were vit D deficient and were fine once it was sorted out. But it does depend on that being the cause! One was improving after a few weeks of the high dose treatment Rhodri mentions and by the time she had finished was fine but a few months later it came back. Her vit D was checked again and it had fallen again. A second course of 60,000 IU/week was enough and since then she takes 1,000 IU every day of life with no further problems.

Low vit D is common in several autoimmune disorders but it isn't always the cause of the symptoms, that is down to the illness itself and only treating it will sort out the symptoms. You may have a doctor tell you it is due to low vit D - but the illness is being untrearted. In that case sorting the vit D won't work and the illness may continue to get worse. A case in point might be the PMR I mentioned and that would fit with what Rhodri describes so I do hope he asks his doctor to think again, not just about the dose. A patient with PMR would very likely have low vit D - but improving it won't cure the PMR and the symptoms would progress just as Rhodri describes. Being unable to stand from sitting is typical, as are aching legs and difficulty walking. There are a couple of other things that would be almost identical in presentation and the doctor needs to consider that too.

And the bottom line is if improving the vit D level doesn't help, and especially if you get worse, go back to the GP and ask to be referred to a rheumatologist asap together with a request for some tests in the meantime. In the NHS that may take a few months these days - but if you are bad enough they should arrange an emergency appointment (not urgent, that just means a few weeks sooner than routine which in NI can be over a year!).

Thank you for your reply. I had assumed that feeling awful was a side effect from taking high dose vitamin D,but did also wonder whether the vitamin D deficiency was being caused by something rheumatoid as some thirty years ago a blood test showed that I was rheumatoid factor positive but when I checked this out with a consultant he did what I think he referred to as an atom test and gave me the all clear,.Do you think that I should stop taking the high dosage vitamin D pills for a week to see if this helps? In any case I will contact the doctor on Monday either by phone  or appointment but there will be a delay for this to happen. Rhodri.

Thanks so much for your replies. All a bit baffling, particularly using the dose Vit D causing many of the symptoms I already have!

Eileen, I have had tests for inflammatory markers and RA but not sure what tests exactly. I will look further into what you have talked about, thank you for all the information.